Focusing on the Caregiver:
U-M research offers insight into helping caregivers cope
Pauline Reisner and Mark
Bernhard say teamwork is key
to coping with cancer.
Sixteen years ago, Mark Bernhard
was diagnosed with colorectal
cancer. Five years later, he survived
prostate cancer. By the time the
colorectal cancer reappeared in
spring 2007 and spread to his lungs,
Mark and Pauline Reisner, his wife of
30 years, knew they could handle
whatever came along.
And so, when Bernhard and Reisner
were invited to participate in a University of
Michigan Comprehensive Cancer Center study
measuring the impact of various interventions
on quality of life for both cancer patients and
caregivers, they said yes. As part of the study,
a nurse met with the couple to talk about how
they were coping and to provide them with
information and support.
"I really appreciated the support and the focus on the caregiver," Pauline said. "I looked forward to the visits. It's not that I had desperate
feelings. I knew I had support, but it was about being able to talk about where we are. "Without this, I probably wouldn't have
recognized the need to talk or gone about finding resources on my own."
As cancer invades the body, it breaches the
boundaries of relationships, too. Husbands,
wives, partners, mothers, fathers, brothers,
sisters and friends take on the unfamiliar role
of caregiver -- and with it, a tremendous bundle
of responsibility and emotion. Consider first:
Caregivers may be anxious about the care they
need to provide. Tensions may arise as patients
interpret caring gestures as overbearing. Top
that with the burden of taking charge of day-to-day affairs like paying the bills, keeping up
the house and maintaining their own jobs. And
don't forget the underlying fear of losing a
loved one to cancer.
Although cancer care focuses almost solely
on patients, a growing body of research is
documenting the impact of cancer on caregivers.
Studies have shown that people who care
for loved ones with cancer suffer as much
emotional distress as the patients themselves.
And yet there are far fewer resources tailored
to caregivers' needs.
That's why Laurel Northouse, Ph.D., R.N.,
co-director of the Cancer Center's Socio-Behavioral Research program, and her colleagues
designed the study in which Bernhard
and Reisner participated.
"Caregivers are often viewed as support
persons to patients and seldom as care recipients," Northouse said. "Most people are not
prepared for becoming a caregiver, and this lack of preparation can have a negative effect
on them. We now have a better understanding of the caregivers' experience. The next step
is to determine the best ways to provide this
care not just to patients, but to their caregivers
as well."
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